UK ME/CFS Research Collaborative | Minutes of the executive committee meeting held on 15 January 2016.

Plans for a Grand Challenge involving possibly recruiting up to 10,000 participants for detailed phenotyping and genetic analysis were discussed at the last meeting of the UK ME/CFS Research Collaborative executive committee on January 15.

Other items that took up a deal of attention were their second annual scientific conference in Southampton later this year and various ideas for a Code of Conduct on communications matters.

Possible speakers to approach: Francis Collins (NIH), Leonard Jason, Mark Van Ness, Alan Light, Jason Ellis, Susan Vernon. Consideration to be given to expert panels to stimulate scientific debate at the end of each plenary brining in all different angles and perspectives, including patient voice.

The meeting will take place on 13-14 April in Bristol, There is an exciting list of experts, many from outside the ME/CFS field, attending the meeting, to design the grant. Preliminary thoughts are that the study will recruit > 10,000 participants for detailed phenotyping and genetic analyses whilst collecting samples for future omic studies. An outline grant will be submitted in September 2016. Once confirmations have been received, a list will be shared on the Action for M.E. website. EC will follow up confirmations.

Meetings with Wellcome Trust MRC to be held to discuss a potential application. Then meeting with MRC to discuss additional opportunities for funding

I have been (and remain so) very critical both in public and in private about the way in which the SMC covers ME/CFS research. I had a short and very robust discussion with the SMC observer on the media coverage of the Lancet Psychiatry paper at the CMRC Board meeting last Friday.

As I have made clear over the past few weeks, I felt the media coverage (which was generated by the SMC) of the Lancet Psychiatry paper on the PACE trial was dreadful and this resulted in the MEA sending in a formal complaint about the Daily Telegraph to the Independent Press Standards Organisation - which was upheld. I believe the MEA was the only UK charity to send in a formal complaint about the Daily Telegraph.

The MEA was also the only UK charity to get a letter that was critical of the PACE trial paper published in Lancet Psychiatry. So I am not being censored in any way as to what I say about both the PACE trial or the SMC.

As I have also said on many occasions in the past, a collaborative of this nature brings together a group of people with a range of views about ME/CFS. I have joined the Board of the CMRC because I have always believed that it is better to sit down and debate differences of opinion and disagreements with people you may disagree with. Complaining or moaning from 'outside the tent' in this case is not an effective process.

In the case of the SMC and its membership of the CMRC, I am trying to persuade this organisation that it needs to think again about the way in which it presents ME/CFS to the media, as well as the 'experts' it chooses to comment on ME/CFS research to the media. There is still a serious division of opinion between myself and the SMC but I am not giving up!

In the case of the SMC and its membership of the CMRC, I am trying to persuade this organisation that it needs to think again about the way in which it presents ME/CFS to the media, as well as the 'experts' it chooses to comment on ME/CFS research to the media. There is still a serious division of opinion between myself and the SMC but I am not giving up!

There is still a serious division of opinion between myself and the SMC but I am not giving up!

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Thank you for your perseverance and civility in the face of such intransigence - it is truly admirable. It is certainly easier to snipe from the "peanut gallery" than to sit in the meetings and deal with "those people" face-to-face.

My comment about censorship was in regards to the requirement to not criticize other members of the collaborative.

I have always believed that it is better to sit down and debate differences of opinion and disagreements with people you may disagree with.

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I agree with this, but I do think that patients should be able to know what's going on. When we get such limited information on these debates, and when the outcomes are often so bad, it doesn't seem like a great thing to support. I expect that you would be happy to have these debates in public - if your opponents are not, this surely does not reflect well on their confidence in their arguments. Can we push for more real and open debate? I think that doing so could only benefit us.

The item from the minutes on Code of Conduct reads to me as if Dr. Shepherd was fighting in our corner, ensuring the patient view was not silenced:

minutes said:

Code of Conduct for Communications

There have been a number of iterations of this and a further revision was considered. It is a really important document and we need to ensure that we are clear about how the CMRC supports scientific debate and does not stifle individual members’ perspective and positions.

CS will circulate a further revision for consideration with the last version reviewed at the last CMRC executive. All executive members have agreed to contribute to improving the code for conduct which will be finalised at the next executive meeting.

we need to ensure that we are clear about how the CMRC supports scientific debate and does not stifle individual members’ perspective and positions

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Come to think of it - and no criticism of Charles Shepherd here, just a general comment - this whole business about "respecting everyone's positions" is a bit, er, postmodern, isn't it? Like there are multiple truths and all are equally valid?

I don't think so! Some of the various hypotheses being tested by CMRC members are likely to be just plain wrong. As someone else said here recently (sorry can't remember who you were), "science is not a democracy".

I hope the severely affected aren't completely ignored at the next conference as they have been the first 2. No mention of us again, I don't really know why all the time was spent initially (again) on priorities if one of those identified, severe ME, clearly isn't.

It seems that as the first wave of MRC funded research finally concludes, the next is finally now up for funding ;can't have too much money going on CFS at once! & the research focus will be the Long talked of big data study , now called the grand challenge. Shouldn't the scope for the UKRC meetings go beyond the yearly conference(10months away) & 1 broad research effort? Shouldn't we have a well rounded research effort with much more done to encourage interest in areas hitherto neglected in uk - eg neuro-imaging, exercise SCIENCE, the severe, post Mortem, CSF, autoimmunity? Shouldn't there, as in the a states, be a move to better defining the illness away from broad a UK CF syndrome to a group of serious illness which serious Drs will actually consider worthy of their time? I note the MRC highlights - notices vaguely "put out there" welcoming research - on neuro inflammation in CFS isnt getting picked up on. Is that surprising in the way CFS is framed in the UK, ie with the still dominant CBT model & history of appalling psychologisation? Aren't there aspects of the IOM report, beyond the quite loose criteria HOLGATE likes, such as its a multi sysyem disease with PEM as key feature & a name change that should be much more strongly pushed in UK? Is a yearly conference all that can be done to encourage a sea change in Uk medical interest in ME & is ME or SEID as opposed to the Chronic fatigue plus one Crawley talks of as UK CFS (thanks to the NICE guidelines criteria) really getting recognised at all?

Is this rate of progress good enough - no.
Do I trust AFME , Esther Crawley & Stephen HOLGATE as the main players of this UKRC directing our research future? no.
Do I think SMC should play a key role - no.

To be honest isn't there more pressing matters to spend time on for patients sakes than who can say what about who & when & how, is free speech on research directions, the collaborative itself & it's members other interests really a problem?

"The meeting will take place on 13-14 April in Bristol, There is an exciting list of experts, many from outside the ME/CFS field, attending the meeting, to design the grant. Preliminary thoughts are that the study will recruit > 10,000 participants for detailed phenotyping and genetic analyses whilst collecting samples for future omic studies. An outline grant will be submitted in September 2016. Once confirmations have been received, a list will be shared on the Action for M.E. website. EC will follow up confirmations.

Meetings with WellcomeTrust MRCto be held to discuss a potential application. Then meeting with MRC to discuss additional opportunities for funding"

If this grand challenge study is being encouraged & contrived, rather than experts coming together of their own backs independently then applying to the main funding bodies, surely we could have a similar encouraging of say neurologists to get involved in PET or qEEG scans & funding implied to be guaranteed if they design well designed studies & exercise scientists similarly encouraged to do 2-day exercise confirmation studies.

My concern is the grand challenge will be used to tick the "doing our bit for CFS research" box, or more harshly a fig leaf to cover a large hole where not much else goes on. I don't know if that's fair, maybe SH is going all out with his expertise and wouldn't be able to reach out in other areas, but would the Americans on here be happy if the NIH this year ONLY focused on that 1 post infectious study they've proposed?

One final thing, looking at the attendees of that meeting, very few if any on there are actively involved themselves in CFS biomedical research. Is that the key problem in uk, that the CFS model is just a repellent to serious researchers and also, thanks to NHS set up not requiring CFS clinicians as head of service, there is not the Dr petersons & Kolgenic & Klimas etc to draw on?

A few quick points that people may like to bear in mind when discussing the UK Research Collaborative (CMRC):

1 Like many health professional initiatives in the area of ME/CFS, this involves a group of people who are adding a significant amount of voluntary work to an already very full workload. The Collaborative has no external funding and no permanent staff. If you add up the time taken for meetings, conference attendance and homework, in my case this means adding at least another 7 working days to a voluntary MEA etc workload that is already in excess of 50 hours a week. So there is a limit to what we can achieve with the human and financial resources available.

2 There are a number of positive developments that are taking place/have taken place as a result of the work we have been doing over the past 3 years:

3 A two day annual research conference has been established (which does take a lot of time to organise) that is almost exclusively concerned with biomedical research. The conference is open to any researcher who wishes to attend and we have managed to bring in an excellent mix of UK based and overseas researchers presenting papers who are already involved in ME/CFS research as well as researchers who are new to the subject. In addition, we have a growing number of researchers from overseas, PhD students and medical students attending. There is no other annual ME/CFS research conference taking place anywhere else in the world that is organised on this basis.

4 We are progressively bringing in major research funding organisations into the collaborative - recent examples include Arthritis Research UK and The Welcome Trust - and have established firm links with all the major government research funders (eg MRC, NIHR)

5 We are now working on Professor Stephen Holgate's Grand Challenge. This will involve the collection of a vast amount of clinical data and biological samples from over 10,000 people with ME/CFS here in the UK. A wide range of experts in epidemiology, genomics, metabolomics, proteomics etc have accepted the inivitation to attend the RC Workshop in April. This will then proceed to preparing what is possibly the largest ever reseach funding application in the history of ME/CFS being made

6 As with all collaboratives there are differences of opinion relating to almost everything we discuss and I clearly have disagreements relating to how to deal with criticism of research that involves another member of the collaborative and the role of the SMC. But these are relatively minor issues and only take up a very small proprtion of our time (the discussion on the new Code of Conduct took about 10 minutes at rhe Board meeting last week)

7 Professor Stephen Holgate has played a crucial role in setting up the CMRC - partly based on a successful research collaborative that he set up for lung disease, which is his speciality. Anyone who has met and spoken with Stephen will know that he is a very caring and compassionate physician who reallly wants to get to the bottom of what is causing this illness and to find effective forms of treatment. There aren't any other doctors around who have real influence in high places when it comes to biomedical research into ME/CFS and who can succeed in binging in colleagues like Professor Hugh Perry (Chair of MRC Neurosciences Board and a Professor of Experimental Pathology) into a group like this.

8 So, in my opinion, the positives associated with setting up the CMRC far outweigh any disadvantages

9 Would research into ME/CFS here in the UK really be in a better position if, as some people want, the CMRC packed up, or some of the charity members left? I think not…..